Spoon theory: How a cutlery metaphor can help explain the energy it takes to live with disabilities

This piece originally published on Nov. 17, 2021.

This opinion piece is by John Loeppky, a disabled artist and freelance writer/editor in Regina. It's part of a series called Taking a Sitting Stand, about disability issues — and is a partnership between CBC Saskatchewan and CBC's Creator Network.

For more information about CBC's Opinion section, please see the FAQ.

There is often an arbitrary distinction drawn between invisible and visible disabilities.

I apologize a lot (Thanks, anxiety and panic disorder) but there's no apologizing for my wheelchair or my spasms. I'm lucky, in a way, that my cerebral palsy is obvious, at least if we're face to face. 

The effects of my other disabilities, especially those that aren't overt, are harder to explain. When I'm bed-bound because the temperature shifts 30 degrees in two days, or I'm overwhelmed by the thought that I've failed every editor I've ever submitted a story to, it can be really difficult to effectively describe what I'm experiencing.

But just because my mental illness doesn't show up on a brain scan, doesn't make it any less of a reality for me; it just makes it much less obvious to others. 

Author, mental health advocate and internet personality John Green speaks regularly on his Vlogbrothers YouTube channel about how challenging talking about invisible disabilities — in his case obsessive-compulsive disorder — can be. 

"It seems to me that the stuff happening way down inside of us is difficult to talk about, partly because those experiences aren't really accessible by the senses," he says in the video "What OCD Is Like (for Me)." 

"You can't usually hear or see psychic pain and it's difficult to describe without simile or metaphor ... I can say what it's like more than I can say what it is."

I am of the belief that our invisible disabilities are not truly invisible in the way society traditionally weaves its narrative about body and mind. My panic attacks are exceedingly obvious to my wife, to my friends and to my family. They are only visible to those I trust, to those I let into this experience. The rationale behind not opening that door are many. Discrimination, shame, internalized ableism, and being too damn tired are just some of valid reasons not to open yourself up. 

And so, explaining a disability, especially to those with whom you are less familiar, often feels like grasping at straws — or spoons. 

Christine Miserandino came up with the Spoon Theory, a cutlery metaphor, in 2003 to describe how much energy it takes to live with a disability, in her case Lupus.

Here's an example with some everyday tasks: